Feeding Clinic Pre-Admission Meeting

:::Edit: Oliver did so well on his first day of "school" (Mom's Day Out) yesterday. He loved it, especially being with his new friends. Bennett and I enjoyed our day as well. In fact, my husband noticed a marked improvement in my cheerfulness when he walked in the door from being at school all day. And our friend who called this evening noticed such a difference in my attitude that he actually wondered if I had been drinking! Ha! Guess I really did need an opportunity to recharge.:::

Yesterday morning, I had an important phone call with the Baylor Feeding Clinic. It was our Pre-Admission Meeting in preparation for our admission in a few weeks and it was hugely helpful.

I was able to learn more about the program and find out what our time there will likely look like.

First and foremost, I learned that the Feeding Program lasts 30 days. (Four weeks! Who-hoo! I can do this!! The lady said it can last longer but is not likely.) The first two weeks of the program will be spent developing and implementing a plan. The second two weeks of the program will be spent training me and Brian on how to feed Bennett effectively.

The Feeding Clinic's goal is to get Bennett off the feeding tube as quickly as possible. The psychologist said most children who leave the clinic are able to be weaned about 70% of the volume of formula they came in on. If we can get to that for Bennett, he'd be taking all of his calories by mouth except for about 9 ounces of formula (or one out of 6 of his daily feeds).

The Child Psychologist that I spoke with made a really good point considering Bennett's unique needs - his high caloric needs and yet lack of desire for food. She mentioned that CF kids present a challenge because they are not motivated internally to eat. But, she said in her experience, they do respond well to the program since it focuses on motivating the child to eat externally.

At this point, unless there is a feeding issue we don't yet know about (such as difficulty chewing or swallowing), our goal will be to increase the volume of what Bennett is eating. The Child Psychologist said to do so, we will likely begin working with him on soft foods, food that do not require him to get tired or fatigued while eating. Soft foods are efficient foods, foods easy to eat and swallow. She said it may seem like we are working backwards when we work with soft foods but the hope is to get his volume up with soft foods and then begin to reintroduce chewing foods. She even mentioned the potential of blending pasta so that he is required to eat two bites of blended pasta (a soft food) to every one bite of noodle (a chewing food).

Apparently, the Speech Therapist at the Clinic will determine everything about the way Bennett eats: which food are introduced, how much, when and how. Bennett will likely have Speech and Occupational Therapy daily.

The Feeding Clinic Child Psychologist did alot of "warning" me. She warned me that this process is hard. She warned me Bennett will likely protest, even as laid back as he might be. She said parents often see a side of their children they've never seen when their children's eating habits are challenged. She explained he will protest at first. But, she said, she finds children will often fight ten times harder when they're parents are following the Clinic's feeding protocol. And she warned the worst part is when the children are forced or participate once they return home.

The Child Psychologist said Bennett will be taught through this behavior modification process that he has control on whether or not he eats but he does not have control over the plan, what he eats and how.

As far as follow-up goes, the Child Psychologist said we will have to go home and continue the behavior modification plan just as if we were in the hospital. This is time intensive and can be stressful. It means sitting with Bennett for 25 minutes sand focusing on nothing but his eating. It means potentially listening to him scream for 25 minutes because he doesn't want to eat. It means doing this for at least 6 months until he has fully taken to the program and begins eating appropriately on his own.

Overall, this process of getting him to eat can take a year or more. If he has skill he must learn (such as how to swallow correctly or how to chew his food efficiently), we may have to return at some point for the Baylor Feeding Clinic's day program (a shorter, less intense version of the in-patient program). But, already Bennett is showing he may thrive in the program. Already, Bennett can put in his mouth and swallow foods that most children who go to the Baylor Feeding Clinic cannot (such as bites of pizza or steak).

My prayer is that God would already prepare Bennett for what is to come and help him catch on to the behavior modification process quickly. We are hopeful and encouraged that this is a good step for him and that he will thrive. We are getting ready for the hard work to come, in hopes it will all be worth it!

1 comment:

Lol! They wondered if you had been drinking. Funny! I'm SO glad you have that opportunity! It helps so much!

Hmm ... I can understand starting with softer foods and getting fatigued. To this day, Azer will eat yogurt and mushy mac & cheese better than most other foods. Heh .. I know too well the sitting at the table for 25 minutes waiting for him to eat.

Hmm .. Azer is very laid back as well. Barely has ever had a temper tantrum. He never fought us about food, never got upset, never just flat out refused. Just has never been hungry. I spent months trying to convince the doctors that he isn't being stubborn or rebellious ... he just has no appetite! Lol, it's hard to imagine Bennett protesting and fighting!